The condition is a very rare, life-limiting disease that causes progressive complex needs and severe learning difficulties – and most children do not live into adulthood.

Mum Kelly, 39, from Stafford, explained: “I’ve trained with another gym member, Rich Bell, for a couple of years now and it was his suggestion that we held this 24-hour work out.

“He is aware of the difficulties we’ve had with Penny’s ongoing health issues and wanted to do something to help raise money for her. So he came up with this crazy idea and, as he is involved with Blood Bikes, it was decided that the funds raised would be split 50/50 between the two.”

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Kelly, who lives with husband Andrew, stepson Tyler, 18, and son Harry, 11, added: “Fundraising for Penny will help towards sensory equipment. We would like to make her a sensory room with lots of soft play and she will eventually need a downstairs bedroom and wetroom.

“This money can help towards giving her the most amazing space with everything she will need as the disease progresses.

“We also want to take her Disneyland. Penny loves Disney and it’s something we have always said we would plan for when she is older.

“But we want to take her while she is mobile and able to enjoy the experience. We want to make as many happy memories as we can.

“Hopefully this event will also raise awareness of Sanfilippo Syndrome and the work of the amazing Blood Bikes team.”

The 24 hour wod-a-thon is taking place on Friday, December 28 from 9am.

“There will be a work out on the hour every hour for 24 hours and they are designed to be sustainable so anybody can give it a go.

Anybody is welcome to come along and join in, they just need to pay a donation and fill out disclaimer which can be found online www.centralstaffscrossfit.com/24wod.